For Colored Gurls Who Consider Blogging & Glitter When Chronic Illness Gets Too Real, and Waiting Rooms Get Too Stuffy, and Folk Don’t Have No Act-Right

Trust me. I’ve spent some time being sick over the course of my life. The first few weeks of my new year were spent recovering from acute bronchitis (non-chronic), coupled with a really sexy flare-up of one of my old illnesses.

I believe in cosmic irony: I was raised by a medical health professional. This means that I am acutely aware of my body and how it works. This also means that I’m acutely aware of the medical health field in general, how absolutely frustrating it can be, the five million questions you have to ask in phases before diagnoses AND after diagnoses, and so on. I’ve spent a lot of time in Urgent Care centers, in (what my primary care giver calls) “Doc-In-A-Box” Pharmacy Wellness centers, university health centers, and ERs that smell of disinfectant & sound like buzzing fluorescent lights. I’m pretty clear on the fact that “existence in a body is vulnerable”… for everyone.

I’m well enough to go to a traditional workplace every day from 9 to 5 pm and fulfill my duties as assigned. I take a LOT of pride in my professional identity and the work that I do.

Feeling like “Mama, I made it”! Receiving an award for some of the work I do.

I also have to acknowledge what sociologists call my “passing privilege”. In this case, I mean that my ailments are largely invisible and so, I would have to intentionally disclose. I want to acknowledge that early on so you can understand the sociocultural spaces I’m writing from.

Yet, there is a constant and persistent pressure to be silent about chronic illness and sickness. I argue that this pressure is especially salient for those who work in externally-facing fields which hinge themselves upon overall productivity & prestige (writers, bloggers, media reps, fields of business, academics, artists, etc.). So the relationship that must be negotiated is “How should / do I engage the concept of illness and chronic illness on my platform… (and what do I stand to lose by simply acknowledging sickness)?

I’d been thinking about that for quite some time when I came across Johanna Hedva’s beautiful, game-changing, and brilliant piece called Sick Woman Theory (2016). She offers a construct which I believe is helpful for understanding WHY there is so much silence and misconception around sickness and chronic illness:

“Sickness” as we speak of it today is a capitalist construct, as is its perceived binary opposite, “wellness.” The “well” person is the person well enough to go to work. The “sick” person is the one who can’t. What is so destructive about conceiving of wellness as the default, as the standard mode of existence, is that it invents illness as temporary. When being sick is an abhorrence to the norm, it allows us to conceive of care and support in the same way.

Care, in this configuration, is only required sometimes. When sickness is temporary, care is not normal.

In a capitalistic society that places mass and over-productivity at the forefront, people with chronic illnesses have to:a) get creative about their work & how it is doneb) get creative about whether to / how to disclose their illness(es)c) wade through constant misconceptions about their abilities to “produce”d) deflect the sickness-sleuths who (for whatever reason) believe you take pleasure in mis-reporting where your body is & what it needs

Hedva’s (2016) piece came to me when I was collecting my own bravery in regards to chronic illness. It came at the end of a month-long trajectory of weighing the pros and cons of addressing this topic on my public platform. (It’s not like I write anonymously). What I realized was that all too often, silence quenches the space where we should and could call for deeper inclusion and understanding. The pressure to stay silent gave way to the belief that we can learn, grown, and benefit from shared stories. I believe that we can find some “act-right” (defined here as the ability and the desire to live into better actions & decisions) when we know the following things:

1) Illnesses (and their symptoms) exist on a spectrum:
There are some illnesses that require intense care and may lead to not being able to work. There are some illnesses that allow for work with accommodations. There are some illnesses that, with proper management, do not get in the way of what we perceive to be traditional work. While there are certain markers and similarities of type of illness, the ways it affects individuals are varied. So, let. people. live.

DO NOT SAY “You aren’t well enough to be (insert location here: at this concert, at work, outside, etc)”. Instead, develop a rapport so that you can genuinely ask, “How are you feeling today / in this moment”? Understand that in many cases, people with chronic illnesses and / or their caregivers understand both their abilities and their limitations, and will communicate them with you, as appropriate.

2) Wellness and care looks different for everyone.
Chronic illness is not just a physical process. There is meaning-making that needs to happen on an emotional level, on a cognitive level, and many times, on a spiritual level (here’s where you can get really existential about the meaning of life and why there is human suffering, but… I ain’t gone do it in this blog post). This means “care” is often multi-tiered. For me, “care” looks like doing paying work that both satisfies my spirit and offers benefits that pour back into my wellness. Care looks like getting enough rest, going to the Dr., and taking my medicine as prescribed. Care also looks like going to the nailery (that’s Philadelphian AAVE dialect for “nail salon”).

Judge. me. if. you. want… but my body needs to be dipped in glitter. Regularly. My body can experience pain as well as pleasure. I’m intentional about cultivating pleasure in this way. (Also, trust me, safely venting with my nail tech keeps folk from gettin’ cussed out when they say inappropriate things). Speaking of which…

3) If you’re not a doctor, it’s generally best not to comment about someone “looking or not looking handicapped / sick / ill” etc. or try to “diagnose” their symptoms based on a case you’ve seen before.It’s 2016. We gotta do better. A few days ago, I went to dinner with a good friend and took the train. I got lost on the way and ended up walking quite a ways past my pain threshold. After dinner, I decided to take an Uber home so that I wouldn’t further damage or tear the fascia in my feet. When I asked my driver to pull up to the handicapped parking spot, here is how my Uber Driver responded:

Uber Driver: They let you do that?
Me: Excuse me??
UD: I mean, you’re not handicapped, are you? You don’t look it.
Me: I’m not sure what you mean. Do you see the placard? A doctor has to sign off for the placard. So…
UD: Oh!!! YOU POOR THING! What happened honey?
Me: *blink*

Although this was one of the milder interactions I’ve had surrounding an ailment, it was still inappropriate. (Here’s a point to take home: people can be both well-meaning and inappropriate). If you have a rapport with the individually, then sharing and asking well-placed questions may be okay. In the best scenarios, the individual will freely share about their ailments if they deem you safe and / or it necessary. But if not, just let. people. live.

If you’ve gotten this far into the post I don’t want to leave you without resources that facilitate “act-right”, further understanding, and clarity. Two absolute must reads on the topic of chronic illness(es) are Christina Miserandino’s Spoon Theory and Johanna Hedva’s recently published Sick Woman Theory. I also cannot overstate how much I value the community at Chronic Illness Cat. It’s a healthy blend of encouragement and humor. (No glitter… but that’s why I go to the nail salon). Because Lord knows, there’s got to be a little space for all of it.